Sunday, October 28, 2012

Please Stand By (and a hooray for me)

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My apologies for the lack of a recent post, but my peculiar flavor of creeping paralysis has been especially troublesome of late, and I’ve been spending the bulk of my time in bed. I’ve also been dealing with what seems to be my own special version of the “post-lumbar puncture headache”, which in my case has manifested as extreme dizziness and nausea every time I assume an upright position. It seems that for whatever reason nothing about my disease ever stays on script, and even when I get a lumbar puncture headache it doesn’t present as a headache, but rather the aforementioned dizziness/nausea, making things much more confusing than they need to be. I’ve never minded that I've always marched to the beat of a different drummer, but the fact that my disease has decided to march to the beat of an entirely different symphony orchestra is really starting to bug me.

I needed the lumbar puncture as part of a diagnostic test called a cisternogram, done because of some recent suspicions that I might have a cyst pressing on the base of my brainstem right where my big, juicy, so-called MS lesion sits. Of course, if such a cyst did exist, it could be a game changer, and might explain much of the strangeness surrounding my illness. Getting rid of it would require some tricky open skull surgery that could be potentially dangerous in and of itself, but removing the cyst, if it actually were there, would likely have a very positive impact on my neurologic condition.

The cisternogram involved getting an injection of a contrast agent directly into my spinal column (hence, the lumbar puncture), followed by a series of CT scans, which would show the alleged cyst much better than a standard MRI. During my nearly ten year MS (or whatever it is the hell I have) career, I’ve literally had over twenty lumbar punctures (both for diagnostic and treatment purposes), and have had very little problem with any of them. In fact, I’ve often said that I’d rather have a lumbar puncture then dental work. Unfortunately, this time around, I’ve been zapped with post puncture putridity, which finds immediate relief when I relent from any efforts to achieve an upright posture and resume lying in a horizontal position. If the situation persists past this weekend, I’ll probably need a blood patch (click here) to seal the pinhole in the lining of my spine, but I’m hoping to avoid that, especially since Hurricane Sandy should be hitting here sometime Monday/Tuesday, making getting to the hospital for the procedure a bit of a hassle, to say the least.

Alas, initial indications are that the cisternogram did not detect a cyst, although I still need to do some final follow-up with my neurosurgeon. It’s very strange to find myself in the position of actually hoping for a brainstem cyst, the removal of which would necessitate getting my skull drilled open, but as distasteful as that prospect may be, it seems absolutely yummy compared to enduring the never-ending and increasingly disabling march of my disease progression. So, I’m pretty bummed that it looks like I don’t need delicate brain surgery. How’s that for a sentence I never thought I’d write?

On a much happier note, the fine people at BNAC (the Buffalo Neuroimaging Analysis Center) have decided to honor me and Wheelchair Kamikaze with a service award, which was presented on Saturday, October 20, at The Center’s “Brains and Gains” event (click here). The award is for:

 "Service in advancement of the understanding of multiple sclerosis among patients worldwide through and contributions of The Buffalo Neuroimaging and Analysis Center as Advisory Council Member, donor and friend".

BNAC does cutting edge research on CCSVI and MS, as well as investigations into a host of other neurodegenerative diseases. I’ve been on the Patient Advisory Board of BNAC for about a year now, and was very surprised to be chosen for the award (and also quite chuffed, as my British friends would say). My heartfelt thanks go out to Doctor Robert Zivadinov, Doctor Bianca Weinstock-Guttman, Dean Michael Cain, the delightful Linda Safran, and the rest of the BNAC staff. The rigors of dealing with everything that comes with having a mysterious chronic progressive disabling illness have been getting kind of punishing lately, and word of the award was a wonderful surprise coming at just the right time. Muchas gracias, BNAC…

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  1. Congratulations on the much deserved award condolences...on not needing delicate brain surgery....
    Yea, you're right. Something I'd never thought *I'd* say either.
    Stay safe during Sandy's visit!

  2. Always rooting for you against this awful disease.

  3. So sorry about all you contend with, Marc...the headache, the worsening M.S.....or whatever it is, and the proverbial stone wall you are up against, yielding no new answers. Gratified that Buffalo recognizes how terrific you are, just as the rest of us have known for so long. Mazel-tov to you!

  4. Hey, some "official" recognition for all the good work you do - fantastic! And the congrats go to the BNAC for having the good sense to recruit you to their advisory board in the first place!

    Keeping fingers crossed that you don't have to deal with H. Sandy AND a blood patch tomorrow.

  5. Hang tough, brother.

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  7. Congrats! A well deserved award. I do sincerely wish they'd find something else besides, "we don't know". I'd pray for you to have a cyst on your brain stem if you so wished, but I can't get myself to do it unless that's what you want. Again, I am reminded on how my situation is a cake walk compared to most people with MS(or whatever the hell it is). Friday night I got dizzy and thought I'd fall for about 30 seconds. By far, the longest I have felt that kind of dizziness. It was frightening to say the least. The funny part is, I was more worried that people around me might think I was drunk or high. I really need to get over the stupidity of that and move on. I am grateful to read your posts. Thank you.

    Dave H.

  8. Hoping that this too shall pass.. I am also sending healing vibes to you.
    The honor that was bestowed on you is wonderful - you totally rock!
    Huge hugs and kisses to you!

  9. You're always on my mind marc. Congratulations on that award. Love you miss you

  10. Hey Marc-- First, the award is well-deserved-- congratulations!

    Second, it appears we are simultaneous post-LP sufferers. I'm not the veteran LP guy you are, but I've had one other one and did get the post-LP headache that time; however, it was nothing lying horizontal for a few days didn't cure.

    THIS TIME, however, was hellish. The pain was so bad as to frighten me. I think it started when the neuro resident had to try multiple points of entry(so multiple small holes this time instead of one)-- anyway, For six days the pain was excruciating. Merely sitting up, much less standing up, brought on the need to vomit. The only thing I have left my bed to do in 6 days is pee-- haven't showered.

    I was hesitant to get the blood patch because the ER docs here seemed on the fence about whether it might make things worse in my case. What has ended up making the difference is a much stronger narcotic--Percocet, as well as a "transderm" scopolomine patch behind my ear for nausea. I'm now able to stay vertical for about a 1/2 hour at a time.

    Add the presence of CSF to the list of things I will no longer be taking for granted!


  11. Congratulations on the award. Much deserved. I too am in a similar situation of mystery (MS specialists are not sure what I have or what I have in addition to MS) - I found myself hoping to have thoracic spine surgery, but no such luck. I feel your pain with the lumbar puncture side effects. I had a horrible headache/dizzy/sinus pain feeling afterwards. They tried a caffeine drip which worked the first time. The next time I had a lumbar puncture I had to have the blood patch - not fun, but worked immediately. Good luck!

  12. sorry about the puncture-itis. i have always been the poster boy for meds not doing what they are supposed to do. these MS-type things can be frustrating enough on their own without added complications. anyway, rest and be well.

  13. I've felt your pain on the lumbar puncture and need for a blood patch. I had one, and was told less than 1 in 10 need a blood patch. After throwing up in our 3 week old car (undriven for 2 of them because I was in the hospital) and spending very sick days at home, my wife took me to the E.R. After another 2 days in the hospital, they gave me the blood patch where they assured me less than 1 in 10 have problems. I wouldn't leave until the headaches went away...Three days later, I had blood patch number 2. Luckily the "third time is the charm" rule worked. Still, it was a miserable stretch.

    I've also frequently found MS puts me and others in position to hope for diagnostic results others would wish on their worst enemies. When I was diagnosed, I was told the MRI results were consistent with 3 things, one of which I knew I didn't have. My possible/likely outcomes were MS or testicular cancer. Since all of the problems were in my head, the cancer would have been a death sentence. Yay MS!

    Still sorry, the outcome of your LP wasn't one suggesting a path to relief.

  14. Thanks for all the kind words of concern and well wishes. Happy to report that the lumbar puncture problems have passed, and that Karen and I were relatively unaffected by the horrors of Hurricane Sandy. We live in uptown Manhattan, where the damage was limited mostly to downed trees. Our hearts go out to those who were more severely effected.

    Thanks again, folks. Your support is appreciated beyond words.

  15. We need more of the likes of you Marc, and the type of work that BNAC is doing. Under the circumstances, of course. I'm glad you are feeling better and otherwise safe. :)

  16. I've just discovered your blog and found out about it through reading the article, "Why Me, Why Not Me," that you wrote for MSFocus of the Multiple Sclerosis Foundation. Your article was beautifully written and contained a philosophy that I happen to share. (I was wondering if you read the Lawrence Krauss book about multiverses and the like...) Anyway, I am uplifted by your courage, your questioning, and your energy. I do not have MS, but as a yoga teacher, have led seated yoga to MS support groups, private clients and classes. People living with MS have helped me to discover a way to help people "stay in the game" - it's been an evolving process. I have devised a specialized ottoman for folks - you can check it out at This is not a sales pitch - I can't get a patent on it, anyway. But I am very passionate about the practice of seated yoga (and specifically, my version called, "Yogapod™ Flow)as a bonafide and liberating moving meditation. Am looking forward to reading your past articles on this blog. Thanks for what you do!

  17. So you meet my neurologist (Weinstock-Guttman)